Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Lindsay W., a 42-year-old mother of two, shares her harrowing and inspirational journey with metastatic or stage 4 lung cancer. In March 2022, she began experiencing severe pain in her side. Initially, she thought it was a muscle strain, but after three agonizing days with constant pain, she decided to visit the emergency room, suspecting gallbladder issues. Although her blood work and initial tests seemed normal, further scans revealed fluid in her lungs and potential pneumonia.
However, Lindsay’s doctors made a more alarming discovery. They conducted a CT scan which led to a shocking diagnosis: cancer. Initially, the doctors suspected ovarian cancer due to an elevated CA125 marker, but further investigation revealed that Lindsay had non-small cell lung cancer with an ALK-positive mutation. The cancer had metastasized to her liver, bones, kidneys, brain, and lungs. Her stage 4 diagnosis was unexpected, particularly because Lindsay had led a healthy, active lifestyle and had never smoked, challenging her perception and the stigma around lung cancer.
Doctors initially gave Lindsay only a few weeks to live. At that point, she was frail, weighing just 112 pounds and struggling with extreme fatigue and inability to eat or sleep. But amidst the bleak prognosis, she started to undergo targeted therapy treatments, which provided a glimmer of hope. Her doctors prescribed the targeted therapy drug alectinib, which within two weeks, showed remarkable results, reducing or stabilizing much of the cancer. They also set her up to receive different types of radiation treatments.
However, by September 2022, the alectinib had stopped working, and Lindsay’s condition worsened dramatically, leading to a ten-day stay in the ICU where it was found that her cancer had spread even further. The spread included hundreds of tiny lesions in her brain, known as leptomeningeal disease, a particularly challenging condition to treat.
At this critical juncture, Lindsay transferred to Emory University Hospital, thanks to the intervention of her boss. There, her life was saved through intensive care and treatment, including the introduction of a second targeted therapy, lorlatinib. This treatment, too, worked swiftly, nearly eradicating the cancer within two weeks.
Despite the life-saving benefits of lorlatinib, Lindsay faced severe side effects, including extreme fatigue, edema, vision issues, and significant cholesterol increases. These side effects required her to take additional medications, including stimulants and statins. Yet, Lindsay remains grateful for the treatment, as it allowed her to continue living, albeit with ongoing challenges.
Lindsay’s journey is marked by her resilience and determination to live for her children, fiancé, and stepchildren. She emphasizes the importance of maintaining a positive outlook and manifesting health, crediting journaling and daily affirmations for helping her through the darkest times. Her story has inspired others, leading her to share her experiences on social media platforms like TikTok and Instagram, where she provides support and encouragement to others facing similar battles.
A key message Lindsay shares is the importance of advocating for oneself in the healthcare system. She stresses the need for patients to be proactive, informed, and unafraid to seek second opinions or change doctors if necessary. Her persistence in finding the right oncologist and treatment has been crucial to her survival.
Lindsay’s story is a powerful testament to the strength of the human spirit in the face of life-threatening illness. Her advocacy and outreach continue to offer hope to others battling cancer, showing that there is always a reason to fight and hope for a better tomorrow.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Lonnie V., 54, from Indianapolis, IN, was diagnosed with stage 4 prostate cancer in September 2017. Initially, Lonnie experienced symptoms like urination issues and general body pain, which were first attributed to a urinary tract infection, then prostatitis. Despite antibiotics, the symptoms persisted. In a critical moment of severe lower body pain, Lonnie visited his doctor, who discovered an irregular prostate during a physical exam and recommended a biopsy. The results, with a PSA level of 685 (normal is below 4), confirmed stage 4 metastatic prostate cancer.
The diagnosis brought overwhelming sadness and fear. Lonnie described the period following the diagnosis as disorienting, with a mental state fluctuating between despair and an urgent need to plan for end-of-life arrangements. His oncologist proposed immediate chemotherapy, but Lonnie opted to delay and explore other options. Instead, he began treatment with Lupron, a testosterone blocker, and made significant lifestyle changes, including altering his diet and abstaining from alcohol, to support his treatment.
Initially, Lupron effectively lowered Lonnie’s PSA levels, but after 8 months, the cancer became castrate-resistant, meaning the medication was no longer effective. Faced with new treatment options, including clinical trials, Lonnie chose to participate in a trial combining Lynparza, Zytiga, and prednisone, while continuing Lupron. Although the trial’s side effects were challenging, the treatment proved successful for almost 3 and a half years, stabilizing his cancer and PSA levels.
As the clinical trial’s effectiveness waned, Lonnie faced rising anxiety. He sought therapy to manage the psychological toll, which helped him cope with the constant fear of the cancer progressing. In January 2023, Lonnie was removed from the trial due to declining efficacy. He then discussed alternative treatments with his oncologist, including chemotherapy, and eventually continued the trial medications outside the trial after they were FDA approved. Despite small increments in PSA levels, the treatment was somewhat effective until October 2023.
Lonnie then decided to take a treatment break in October 2023 after 6 years of continuous treatment, as he felt mentally and physically exhausted. Surprisingly, his PSA levels continued to drop during this break, but a recent PET scan revealed significant new cancer activity, prompting a return to the trial medications.
Throughout his journey, Lonnie has remained motivated by a love for life and a drive to advocate for cancer awareness. He uses his experience and social media presence to support and educate others, particularly on proactive cancer screening and patient advocacy. Despite the hardships, his focus remains on helping others through their own battles with cancer.
In closing, Lonnie advises newly diagnosed cancer patients to take their time and not rush into decisions. His experience highlights the importance of patient education, mental health support, and the resilience required to navigate the complexities of a cancer diagnosis and treatment.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Madison G., from Orlando, Florida, was diagnosed with Hodgkin’s lymphoma during her freshman year of high school. Although her father had experienced non-Hodgkin’s lymphoma before she was born, the disease was not something she was overly familiar with. The first signs appeared when she noticed a swollen lymph node in her neck, which was initially dismissed as not serious. However, 5 months later, as the lump grew and became painful, Madison sought medical attention. After several tests, including a CT scan, her diagnosis was confirmed.
At the time of her diagnosis, Madison was 15 years old and found herself in shock, especially as the news came suddenly while she was preparing for a birthday celebration. The sudden hospitalization and treatment brought significant disruption to her life, as she began a regimen of ABVE-PC chemotherapy. Her first day of treatment was particularly difficult, as she had an allergic reaction to one of the drugs, causing her to go into anaphylactic shock. This experience, coupled with the physical side effects of chemotherapy, like severe nausea and bone pain, added to the emotional and mental challenges of her treatment.
One of the hardest aspects for Madison was losing her hair. Although she had anticipated this side effect, she found it more emotionally difficult than she had expected. Cutting her hair and watching it fall out left her feeling unrecognizable and insecure, particularly as her peers made comments, both in person and online, about her appearance. Wearing head wraps to school helped, but the changes in her appearance took a toll on her self-esteem.
Despite the physical and emotional strain, Madison found comfort and strength in her family, especially her mother, who became her closest support. Over time, as her treatment progressed and scans showed no evidence of disease (NED), her outlook improved, and she began to regain a sense of hope. She finished 4 cycles of chemotherapy and then underwent radiation (proton therapy) for 14 days, finding it easier to manage than chemotherapy, although it still came with its own side effects.
The experience left a lasting impact on Madison’s mental health, particularly as she returned to school and tried to reintegrate into normal teenage life while still facing the challenges of being in remission. She became more empathetic and motivated to help others, deciding to pursue a career in nursing after seeing firsthand the impact nurses had on her care.
Madison is now in remission, and while she acknowledges that her experience with cancer will always be a part of her life, she has moved forward, attending Florida State University, enjoying college life, and advocating for cancer awareness.
Name:
Madison G.
Age at Diagnosis:
15
Diagnosis:
Hodgkin’s lymphoma
Staging:
2A
Initial Symptom:
Swollen lymph node in neck that grew larger and became painful
Treatment:
Chemotherapy (ABVE-PC)
Radiation therapy (proton therapy)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Cancer details: Most common and most treatable form of Hodgkin lymphoma 1st Symptoms: Shortness of breath Treatment: 3 rounds (6 infusions) of ABVD chemo
Cancer details: Diagnosed at age 25 1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Samantha R. is a three-time cervical cancer survivor from Las Vegas, NV, who has turned her experience into a passion for health advocacy. She emphasizes the importance of listening to one’s body and advocating for oneself in the healthcare system.
Samantha’s story started in 2016 when she first experienced symptoms like irregular bleeding and pain, which led her to visit her OBGYN. After a Pap smear revealed abnormal cells, she underwent a LEEP procedure. However, she delayed follow-up appointments, which allowed her condition to worsen. Eventually, her doctors diagnosed her with cervical cancer at the age of 27, shortly after her wedding.
Samantha and her husband were devastated by her diagnosis, especially since they were eager to start a family. Her treatment involved a radical hysterectomy, which was physically and mentally challenging. The surgery altered her life significantly, affecting her identity as a woman and her future family plans.
Samantha’s cancer’s recurrence, in 2018, was marked by severe symptoms that her doctors initially dismissed as stress or a UTI. After months of her pushing for answers, they finally diagnosed her with a large tumor in her cervix and intestines. This led her to find a new medical team who took her concerns seriously. She underwent surgery to remove the tumor, followed by chemotherapy, immunotherapy, and radiation throughout 2019. By the end of the year, her medical team declared her cancer-free, but her journey wasn’t over.
In March 2020, Samantha faced another recurrence. This time, the cancer had significantly affected her intestines and surrounding organs. Despite being told by one oncologist that nothing more could be done, she sought treatment in Los Angeles. There, she underwent a pelvic exenteration, extensive surgery that removed all organs in the pelvis. The procedure gave her a 50/50 chance of survival, and after two and a half months in LA, she finally entered remission.
Samantha emphasizes that the mental health impact of cancer is often overlooked. The trauma of her experiences left her with PTSD, anxiety, and a constant fear of recurrence. She credits her mental health recovery to therapy and self-compassion, acknowledging that healing from the emotional scars of cancer is a long and ongoing process.
Samantha advises those facing similar challenges to advocate for themselves, seek second opinions, and connect with support communities. She highlights the importance of accessing social workers and other resources available through healthcare facilities. For those without insurance, she recommends seeking help from nonprofits that offer mental health support and community-building opportunities. Above all, she encourages people to offer themselves grace and compassion, recognizing that they are doing the best they can in difficult circumstances.
Samantha’s story is one of resilience, self-advocacy, and the power of community. She has learned to navigate the complex and often frustrating healthcare system and now dedicates herself to helping others do the same.
Name:
Samantha R.
Diagnosis:
Early stage cervical cancer, adenocarcinoma
Initial Symptoms:
Irregular bleeding
Pain
Treatment:
Surgery: radical hysterectomy, pelvic exenteration surgery
Chemotherapy
Immunotherapy
Radiation therapy
Hormone replacement therapy
Hyperbaric oxygen therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Joe’s Rare Desmoplastic Small Round Cell Tumors (DSRCT) Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Joe F., a fitness enthusiast from Brighton, MI, shares his journey of being diagnosed with a rare and aggressive cancer, desmoplastic small round cell tumors (DSRCT), a type of soft tissue sarcoma. Only around 200 cases of this kind of cancer have been reported worldwide since its discovery in 1989.
Joe’s story begins with mild abdominal pain and fatigue that led him to seek medical advice, only to discover through a CT scan that he had multiple tumors in his abdomen and pelvis. This shocking diagnosis came as a blow, especially considering Joe’s dedication to a healthy lifestyle for over 22 years.
Initially, Joe’s doctors misdiagnosed his illness as small cell carcinoma, a type of lung cancer, which led him to seek a second opinion at MD Anderson. However, the oncologist there discovered that the primary tumor was not in his lungs after all. A clinical trial doctor at MD Anderson re-evaluated his biopsy results, diagnosing him with DSRCT.
Joe’s treatment journey was grueling, involving 6 cycles of aggressive chemotherapy–vincristine, doxorubicin and ifosfamide. Despite the challenges, including severe side effects like debilitating bone pain, Joe’s physical fitness allowed him to endure the rigorous treatment regimen. After completing chemotherapy, Joe faced another hurdle when he found out that all the specialized surgeons at MD Anderson had retired. He sought out Dr. Lilja at Memorial Sloan Kettering Cancer Center, a leading surgeon for this type of rare cancer.
Joe’s surgery was divided into 2 intense procedures, each lasting about 10 hours. The first surgery involved removing tumors, lymph nodes, his spleen, part of his diaphragm, and the omentum, which is a layer of fat that holds organs in place. Remarkably, Joe was up and walking within 24 hours post-surgery, demonstrating his resilience. After a short recovery, Joe underwent a second surgery to remove more lymph nodes and tumors from his pelvis, which concluded with the oncologists declaring him in remission.
Despite this positive news, Joe remained cautious, knowing the aggressive nature of DSRCT. To minimize the risk of recurrence, he opted for 2 additional cycles of chemotherapy, followed by whole abdominal radiation. Radiation therapy proved to be another significant challenge, causing extreme fatigue and severe side effects that sometimes led him to question his ability to continue.
Recently, a scan discovered that Joe’s cancer had recurred in 2 lymph nodes in his neck. He has resumed chemotherapy and will likely be on chemo for an extended period.
Joe’s experience highlights the unpredictability and severity of cancer. His story is a testament to the importance of perseverance, a strong support system, and the will to fight through the toughest of battles. Joe continues to face the physical and mental toll of his treatments, but his commitment to overcoming this rare and aggressive cancer remains unwavering.
Name:
Joe F.
Diagnosis:
Desmoplastic Small Round Cell Tumors (DSRCT)
Initial Symptoms:
Mild abdominal pain
Fatigue
Treatment:
Surgery: removal of tumors, affected lymph nodes, spleen, part of diaphragm, omentum
Cancer details: Rare, <3% of all soft tissue tumors, more common in women 1st Symptoms: lump found in right armpit Treatment: Chemo, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation ...
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Jennifer’s story is a powerful testimony to resilience, self-advocacy, and the love of life, even in the face of stage 4 melanoma. She discovered her cancer in 2019 after what she thought was a simple bug bite turned out to be something far more serious. Despite the initial shock, confusion, and overwhelming emotions following her diagnosis, Jennifer has remained steadfast in her determination to live life on her terms.
One of the critical aspects of Jennifer’s experience has been her proactive approach to her treatment. After her initial diagnosis, she sought a second opinion at MD Anderson, which she credits with extending her life. Her advice to others is clear: find a specialist in your type of cancer and ensure that you are fully informed about your diagnosis, including getting genetic and biomarker testing done as early as possible.
…find a specialist in your type of cancer and ensure that you are fully informed about your diagnosis…
Jennifer M. – Melanoma
Jennifer’s life as a single mother battling stage 4 cancer adds another layer of complexity to her story. Financial struggles, the lack of systemic support, and the challenges of balancing work with her health needs make her situation particularly difficult. Yet, she finds strength in her love for her children and her sheer will to live. Her perspective on life has changed, focusing more on her own needs and desires, and choosing to live in the moment despite the constraints.
Jennifer’s story also highlights a broader issue—the need for better support systems for single parents and individuals facing severe illnesses. Her experience underscores the importance of self-advocacy and taking control of one’s treatment path, as well as the critical need for awareness and early detection when it comes to melanoma, a cancer often misunderstood as just a “mole.”
Jennifer’s journey serves as a reminder of the importance of living fully, advocating for oneself, and seeking the best possible care, no matter how daunting the circumstances may be.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
26-year-old Payton G. hails from Dallas, TX. She is a survivor of stage 3 lung cancer (adenocarcinoma with mucinous features).
Payton’s cancer first manifested as chronic sputum or phlegm in her chest, and acid reflux so bad that she would wake up choking on stomach acid. The first doctor she saw put her on antacids and referred her to a sleep specialist. But Payton also began to experience a strange pain in the left side of her chest.
When one night, the pain was excruciating enough to wake Payton up, her husband rushed her to the hospital. A CAT scan revealed an enormous abscess on the lower lobe of her left lung. Antibiotics were prescribed and initially shrank the abscess, but doctors took a closer look when they stopped working. A chance biopsy undertaken by one doctor, acting on a hunch, finally revealed Payton’s cancer.
Payton underwent a successful complete lobectomy to remove the tumor. She underwent 4 rounds of chemotherapy (Alimta and Cisplatin), and experienced some side effects such as excessively dry skin, hemorrhoids and extreme fatigue–but was declared NED after another CAT scan failed to turn up any evidence of disease.
Payton credits her family and faith for healing her and for helping her stay hopeful all throughout. “No matter what comes your way, as long as you have breath in your body, there’s still hope. There’s hope in God, there’s nothing too hard for God.”
Name: Payton G.
Diagnosis:
Lung cancer (adenocarcinoma with mucinous features)
Staging:
Stage 3A
Initial Symptoms:
Chronic phlegm in the chest
Acid reflux
Pain in the left side of her chest and back
Treatment:
Surgery: complete lobectomy to remove the tumor
Chemotherapy (Alimta, Cisplatin)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Hollan is being treated for stage 3A small cell carcinoma of the ovary, an extremely rare kind of cancer.
Hollan’s symptoms–severe pain in her abdomen and under her stomach, bloating, hot flashes, and fever–started back in November 2023. She initially shrugged them off as nothing more than gas pains, but saw a doctor when they persisted; only to be told that all she had was a urinary tract infection and to be sent home with antibiotics.
Hollan got a second opinion, but was told that it was nothing more than a really bad stomach virus. She returned to the emergency room and insisted on a CT scan, which revealed a volleyball-sized mass in her abdomen along with 19 lbs of fluid. The doctors successfully removed both fluid and mass and sent the mass to pathology. After a month, the diagnosis came back: stage 3A small cell ovarian cancer.
Hollan and her family quickly found a specialist in Cincinnati who could treat her cancer. He ended up administering HIPEC. The treatment was successful. Despite side effects such as hair loss, bad mouth sores, significant hearing loss, neuropathy in her extremities, and reduced kidney function, she is now NED. She is now preparing to undergo a stem cell transplant as part of her treatment.
Hollan’s experience has helped her develop a completely new outlook on life. “Cancer has absolutely changed me and changed my mindset about life and death,” she says. Having had mental health struggles in the past, her brush with cancer has fortified her will to live. She urges fellow cancer patients to listen to your body and advocate for yourself.
“You just have to get through cancer and whatever that means to you, make it be what you live for… So I just hope that you can find something that will hold you here.”
Name: Hollan C.
Diagnosis:
Ovarian cancer
Staging:
Stage 3A
Initial Symptoms:
Severe pain in abdomen and beneath stomach
Bloating
Hot flashes
Fever
Treatment:
Surgery: removal of mass in abdomen
Chemotherapy: HIPEC
Stem cell transplant
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Mike’s Stage 4 Diffuse Large B-cell Lymphoma (DLBCL) Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Mike got through stage 4 non-Hodgkin diffuse large B-cell lymphoma (DLBCL). He has been in remission for 3 years now.
Mike did not experience any initial symptoms at all. His cancer was uncovered quite by accident. In the process of setting up his new house, Mike supposedly hurt his back and began to experience profound, persistent pain. His back pain got so bad that at one point he thought he was experiencing a heart attack. A visit to a chiropractor worsened the situation; a chest adjustment led to Mike experiencing a shock throughout his entire body, and a few hours later, he could barely walk.
An MRI revealed the cause of Mike’s pain: a spinal tumor. His surgeon removed the tumor, and it was found to be cancerous. Mike’s oncologist also put him on chemotherapy; he was treated with R-CHOP (cylophosphamide, doxorubicin, vincristine, rituximab, and prednisone).
Mike responded well to his treatments, despite struggling with side effects like intense leg pain, hair loss and, strangely, weight gain; he was still able to work while undergoing chemo.
Aside from his treatments, Mike also credits the steadfast care and constant attention provided by his wife, a nurse, and his family, as well as the comfort and stability provided by his faith and his friends, for his recovery. His story underscores the importance of finding care–not only medical care, but also emotional support, given the toll cancer can take on one’s emotions–as well as how crucial faith can be during treatment and afterwards as well.
Name: Mike E.
Diagnosis:
Diffuse Large B-cell Lymphoma (DLBCL) (Non-Hodgkin Lymphoma)
Staging:
Stage 4
Symptoms:
No noticeable initial symptoms
Persistent, significant back pain which led him to have the MRI that exposed his spinal tumor
It is your game… play it the way that you need to. You will know when to do it.
You know it is your game to play.
Introduction
My name is Mike.
I live in Rincon, GA, which is about 20 minutes outside of Savannah, GA. I’m originally from Savannah.
I had non-Hodgkin diffuse large B-cell lymphoma. I have been in remission now for 3 years.
Pre-diagnosis
My symptoms, well, I did not have any symptoms. I guess I may have, but I didn’t notice, and it was all found by chance.
We moved into a new house. I bought some big pots to put out in front, and you must bear hug them to get them off the truck, and that is what I did. I thought that I had pulled a muscle in my back.
So, for about two weeks, I dealt with the pain of it, and it just kept getting worse and worse. The week that I was diagnosed, the pain got so intense that I had thought I was having a heart attack.
We called the ambulance and took a little ride to the hospital. It turned out that my heart was fine, but I still had pain, so a couple of days later, on a Thursday, I went to a chiropractor.
When he adjusted me in the chest area, I had a shock go from the tip of my head to the bottom of my feet. By the time I had left his office, drove a mile down the road toWalmart, and got out to walk in, I could barely walk. I went back to him that afternoon, and he just did not know what was going on. That evening, when I got home, I had to use a walker.
On Friday, the day afterwards, we set up an MRI with the neurosurgeon that I had used before. But I could not do it, because I could not lie down.
Saturday rolled around, and my wife, who is a cardiac nurse, set up for me to go tothe local hospital here in Effingham County, where I successfully got an MRI.
Discovery, Diagnosis and Treatment
Surgery
Well, in the MRI, I did not know it then and there because no one told me, but they saw a tumor on my spinal cord.
On Monday, December 21, 2020, I checked into the hospital. On Tuesday, I had surgery, and stayed in the hospital overnight.
Then we went down to Tybee because we had rented a house down there for Christmas.
When we were down there, the tumor was sent off so they could check it to see if it was cancerous. However, the surgeon had already known that it was; I guess he had done so many surgeries like that, that he could already tell if it was cancerous or not.
A couple of days later, we had a meeting with an oncologist to discuss my treatment. The combination of drugs I would be taking is known as R-CHOP.
It turned out to be a pretty rough treatment.
Chemotherapy
The first treatment was on that infamous day of January 6, 2021, and everything was going on in Washington, D.C.
Not only that, but Covid was going strong, so no one could go with me to have chemo, and so I was kind of on an island by yourself. I got used to it–and as you’ll see, I wasn’t actually left alone.
The people in the hospital who administer the drugs are wonderful. They have a big heart for people like us and they made it easy. Of course, wearing a mask the whole time you are there is no fun, but they did make it very easy.
I had 6 rounds of R-CHOP every 3 weeks.
Effects of the treatment regimen
During the first round of chemo of R-CHOP, I was told that it was so important to stay hydrated. So when I would get home after treatment, I felt like I would almost drown myself because I had drunk so much.
I had been told that one of the side effects of my treatment regimen would be nausea, but it was a pleasant surprise that that was not the case for me. I think I had needed to take only 2 nausea pills the entire time, which was awesome.
Another thing too that was a bit unusual was that I actually gained weight during my treatment. People normally lose a lot of weight, but I actually gained 30 pounds.
I also lost all my hair after the first rounds of chemo. That was a big thing for me.
Additionally, I had intense leg pain after my infusions. They gave me Neulasta for that, and that is something that I still struggle with today because of the neurological damage done to my system.
I was also informed that I needed to watch out for the third round of chemo. I go to church with a guy who said to me, “Wait until your third round.” But it was not the third round that kicked me in the behind; it was the fourth round. It just wiped me out.
I would have a treatment on a Friday afternoon, and it lasted about six hours. I would get home, and I would be wired that whole afternoon and all night. Then I would not go to sleep until about noon on Saturday. I would just be wired, not hungry but we did have somebody at the church that would make me some vegetable soup and banana bread, and that helped me out tremendously for a bunch of days after I had my treatment. The part of being wired, that was always the worst part of it. Then, by Tuesday, I would be able to go back to work.
I am in sales, and I do not see how anybody in a factory job or anything like that could go through it and keep a job. That being said, I was still able to function for the most part while I was on chemo.
As a matter of fact, I continued to work the whole time I was being administered R-CHOP. On days that I did work, sometimes it was a pain, and on the whole I felt like I was in a cloud. I was still able to work, though, which is great.
I complained one day to the neurosurgeon about why I was not walking better, and he commented that I should feel blessed that I was even walking.
Remission
After I had finished my treatments, I went for a PET scan.
It showed 2 lumps in my stomach that were lit up. My oncologist said, feel free to search for a second opinion. So we did that.
My wife, the nurse that she is, spoke with my sister and a good friend of hers whose brother is an oncologist in Atlanta, and he suggested going to Moffit Cancer Center down in Tampa.
We went down there, and he did some tests that my oncologist here did not do.
All the tests determined that the lumps were not growing at all.
So this means that the treatments were successful and my cancer was in remission.
I have been in remission now for 3 years. I go every 6 months to have a check-up.
PTSD
I may be cancer-free now, but there are moments that I have PTSD. I experience some triggers that remind me of things that were not so pleasant during my treatment time.
Just as an example, I have some photos of the Red Devils, part of the chemo that they call the Red Devils. Those are potent. Anytime I look back and see the pictures of those, I can almost taste them. They were that bad.
That being said, though, I can say that I’ve come away stronger.
Before all this happened, I could not take an MRI, PET scan or CT scan or anything like that without being sedated. Now I have learned how to deal with everything like that.
I think the last MRI I had lasted about an hour and 30 minutes, and it was not bad at all. Getting my port taken out was easy. I am not afraid of needles. I am not afraid of MRI machines, PET scans, or CT scans, either. Not any more.
Looking forward after remission
My experience has changed my life.
You start to think more about your family than about material things that do not really mean a whole lot. The shoes, the watches, the shirts, you know—they do not mean that much.
I am semi-retired now, and cannot wait for the time that my wife will retire, too. As I mentioned earlier, we had built a house about six months before I was diagnosed. We had just moved into the house and were getting things done around the house, and then I was diagnosed with cancer. So, there were a lot of things put on hold, but a lot of those things just do not mean anything to me any longer.
The only thing I want to do now is buy a motorhome and travel. Have a smaller house and travel back and forth. My wife is not quite on the same page with me, but she is getting there, and so I am hoping that that dream will come true. All she wants to do is spend time with our 3 grandkids, which of course is wonderful also.
We have done a lot in our life together. We’ve been to the Caribbean a few times and rented boats and sailboats. We spent time out, about ten days, on a sailboat sailing around the British Virgin Islands, which was nice.
What helped Mike during his treatment
Wife and family
I have nothing but praise for my wife, who is a terrific nurse, and she took such good care of me while I was in the thick of treatment.
She was my rock when I needed a rock, gave me my pills, set my appointments, cooked supper. She was beside herself because she could not go to me for my treatments. But she was still able to drive me to them and drive me home.
With her being a nurse it just came naturally. I did not have a bell to ring, but she was always there for me and was willing to do anything that I needed. She took over.
It’s so important to have somebody to talk to; there were a lot of times that I would get upset, it is an emotional time, and when you are diagnosed with cancer, it tugs at your emotions. So, there were many times that my wife and I would sit there and talk about things.
Anytime that I was uncomfortable, and there were a lot of times my back was hurting from the surgery, I have a 12-inch scar in the middle of my back where they took the tumor out. So, to make me more comfortable, she rubbed my back, her and the grandkids too. They would get a rolling pin and roll it up and down my back, and that always felt good.
I’m well aware that it was no walk in the park for her. She had to take care of the house and its day-to-day concerns. That right there is a huge burden, paying bills and things like that. That weighs heavy on those people and the caregivers.
Faith and friends
My faith and our church family have also really risen to the occasion and have really helped me through this whole thing. A big part of how I have been able to deal with the last three years is because of my faith.
Our faith in God got us through these tough times. I talked to God a lot during those days, and I had peace. I would not say that I was worried because I looked at it this way: If I go first, I win.
You know, sometimes people say it takes a village, and it really does. I just thank the Lord.
I would not say that I was worried because I looked at it this way:
If I go first, I win.
Lessons Mike wants to share
Be mindful of the caregivers too
When I know that somebody has cancer, it is not only “How is that person doing?”, but also “How are the caregivers doing?”
You know, because it is tough on them, and you can see it if you are around people enough. They need prayer, too. They need just as much prayer as the sick person.
My advice to the patient would be to be patient with the caregiver. You are both walking down a road that you have never been down before, and they are going to think one way, and you are going to think another way, but always remember to be patient.
You know, we all run out of patience from time to time, but for me, as a patient, getting upset with my caregiver, I did not like that, and I apologized because, yes, it is a tough thing to go through, and I am the one going through it, but they are going through it also.
They need their time, and they need their respect, and as patients, we have got to give it to them and love them because they love you the best way that they can. We have got to love them the best way that we know how.
Without them, it would be a lot harder. It is hard enough, but going through that time without my wife as my caregiver… I do not know if I would have made it.
We are all on different journeys
My final message would be: everybody has a different journey.
You can ask a question about how you get through chemo and all that, but I think everybody is going to have a different answer. My answer would be: it is your game; play it the way that you need to.
If you feel like doing something, do it. If you are tired, and that is another thing, fatigue, good grief, the fatigue is just unbelievable, and if you do not feel like doing something, do not do it.
Eventually, you will have to get up and do something, but you will know when to do it.
Brittany’s Stage 4 Liver and Gallbladder Cancer Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Brittany, a nurse who works in surgical oncology and a proud mother of 2, was diagnosed with stage 4 hepatocellular carcinoma (liver cancer) and cholangiocarcinoma (gallbladder cancer). She is now officially “no evidence of disease” (NED) thanks to surgery and immunotherapy.
Brittany’s story starts about 3 years ago, when all of a sudden, she stopped menstruating. A pelvic ultrasound failed to turn up any potential cause. In September 2021, she began to lose appetite and her weight began to drop, and she ended up losing a total of 15 to 20 lbs. Her PCP ran a full array of lab tests, but they all came back normal.
In January 2022, Brittany started experiencing bad pain in the upper right quadrant of her abdomen. She rushed herself to a hospital where she had more lab work done and, this time, a CT scan of her chest, abdomen and pelvis as well. Once again her tests failed to turn up anything–but the CT scan found a 10cm mass on her liver.
Brittany transferred to a larger hospital where she spoke with a specialist in liver surgery. A few days later he and his team operated on her to remove the diseased portion of her liver (which amounted to 60% of the organ). However, they found out that her gallbladder had also been affected and portions needed to be removed too, and moreover discovered lesions on her lungs. Further testing finally revealed the true nature of her cancer, and the lesions on her lungs determined that it was stage 4.
Though Brittany’s doctors were optimistic about her chances, they were also realistic, given that liver cancer is not easy to treat and that cholangiocarcinoma is known to be extremely aggressive. But Brittany was determined to beat the odds and overcome her cancer.
Brittany began to undergo immunotherapy in April 2022 and was administered atezolizumab and bevacizumab every 3 weeks. Her cancer responded favorably to the treatment; her liver has been cancer-free since the resection, and all the lung lesions have disappeared.
Brittany’s last treatment was administered in December 2022. Since stopping treatment, she has gotten a CT and MRI with lab work every 3 months; these have recently been spaced out to every 6 months for surveillance.
Brittany would like to share that her experience has definitely changed her life. She refuses to take things for granted any longer, makes sure to enjoy every moment, and is intent upon giving back as much as she can. She also urges fellow patients to take full charge of their own healthcare, to educate themselves fully, and to be their own advocates. “Don’t believe the statistics!” she adds–they’re really just numbers.
Name: Brittany B.
Diagnosis:
Hepatocellular carcinoma (liver cancer) and cholangiocarcinoma carcinoma (gallbladder cancer)
Staging:
Stage 4
Initial Symptoms:
Amenorrhea
Unexplained weight loss
Loss of appetite
Pain in right upper quadrant of abdomen
Treatment:
Surgery: removal of portions of liver and gallbladder
Immunotherapy: atezolizumab and bevacizumab
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
